Deteriorating from My Disease: One Young Woman’s Painful Life with Tarlov Cysts

When doctors found three cysts growing on my spinal nerve roots, by my sacrum, they said not to worry as there was nothing they could do for them.  So, I thought nothing of them; yet, I was having very sharp sciatic pain that traveled down my legs.  Four neurosurgeons later, Dr. Kabins in las Vegas, NV stated my tailbone was severely shattered and I needed to have surgery.  I was scheduled for September 2008.  I spent five and one-half hours debating on whether or not this surgery would help, thinking I was going to be fine.

My pain and walking abilities became worse, so I decided to look back at my MRI from 2007.  I noticed it read Tarlov cysts, so I googled the term and found descriptions of similar symptoms I too was suffering from.  I requested another MRI and received my report two days later, which showed my cysts had grown from 15 mm to 20 mm (about 1 inch in size).

Since that time, I have learned these cysts erode your nerves and bone, and there are only three neurosurgeons in the United States that will do surgery to slow the progression of this disease. I had to file for SSI (Social Security Income) due to obvious reasons.

I feel like a prisoner in my own body.  I awake each morning with muscle weakness, shortness of breath and pain. At what seems like forever ago, I was a very outgoing person; now, I can only handle sitting for about five minutes, and I have intermittent periods of having to either stand or lay down. And where I used to be able to jump and run, I walk with a cane or arm crutches.

I recently learned from the Dr. Frank Feigenbaum from Dallas, TX, I would need two surgeries as my pelvic area is full of them. However, he is concerned about the Tarlov cysts around my sacrum bone as they have started to erode the bone away along with the nerves in my spine. The surgery will require four to five hours, a hospital stay of at least four days, and an extra eight days in Dallas as well as 18 months to heal due to the slow the progression of this disease.

I can no longer work, as I am just deteriorating.  So, in the meantime, I am eagerly waiting to get approved for SSDI and continue to have Hope.

Thanks for listening.

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Global Genes Comments

  1. Wow…
    Hi everyone….just happened across this page. Am having a Tarlov Cyst at S2 drained and fibrin glued on 3/27 at Johns Hopkins due to pelvic and sciatic symptoms. Have had the cyst for @ 20 years.
    Hope the procedure works ..

  2. I was working in a belting company in Ont Canada making conveyor belts which involved a lot bending over and pulling on belts.I did this for three and a half years. one day i woke up with this intense pain in my sacrum and could hardly move the pain was so bad. i went to my chiropractor thinking i strained my back to much. Two treatments did nothing, i went a walk in clinic and they just said i strained my lower back and would do no x-ray. I finally saw my family Dr. but she said the same i strained my lower back. I told her and show her where it hurt which was in my sacrum area and it was tender to touch and getting worse. I requested an MRI which came back showing a cyst in my sacrum but they said these do not cause pain. One day i felt and heard a pop in my sacrum and requested another MRI but they said it was the same size. i found a Dr.FF in Dallas and i sent him my MRI to view and he called me and told me that my cyst is 1 cm instead of only 7 mm as reported and he said it was pressing on my nerves. The second MRI showed it went up 1.5 cm after the pop and two nerve endings were pushed out of place. He called up to the hospital to correct their findings and in his report back to me stated there is nothing else showing that would cause my pain. All the Doctors here don’t think it is the cause of my pain and I continue to suffer three and a half years later because the WSIB are saying i had this since a kid. I am still fighting the system in order to get to Dallas to have surgery because every year that goes by it gets worse.

  3. Kris Lindsey says:

    I had a Tarlov cyst repaired by my surgeon in Dallas. It’s been a year and a half since surgery. I had relief immediately after surgery in the sacral area. However it only lasted for about 2 months and the pain came back but the pain was more intense now then pre surgery. I have had 2 MRI’S post surgery and it shows the area was healing great. I just don’t understand why the pain came back and the MRI showed everything looks great? I was told by surgeon that my sacral nerve was crushed from the cyst and he was hoping it would get better over time. Just wondering if anyone out there is experiencing the symptoms post surgery?

  4. Hi I just got diagnosed with Tarlvoc as well I was active Army got some back pain but Jan 3,2015 me, my husband, 6 months old daughter as well as 3 others got injured on a car accident in Kansas Airport the driver was a Doctorate student of Stanford txting and driving on her way home to Lawrence (T.C). The accident cause my military career and unbearable pain. They didn’t see the cyst not till Dec 2017 when the case was already close. I am frustrated and got depressed due to pain, loosing my Military career as
    well as unable to do more physical activites with my kids and job with out pain. My symptoms are upper and lower extremities weakness, sharp burning sensation, diarrhea and constipation, severe lower back pain and sleeplessness due to pain, my both knees are now deteriorating. I am continuously seeking medical attention for prevention and hopefully cure since now its affecting my knees, upper extremities and quality of life.

    • Very sorry to hear your about your loss and pain. Ive had bad pain along time, finally diagnosed in Feb. Your sx’s are so similar, and I know its sounds selfish, but Im glad Im not alone. What meds do you take?

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